Objectives: To investigate stakeholder perspectives on how patient preference studies (PPS) should be designed and conducted to allow for inclusion of patient preferences in decision-making along the medical product life cycle (MPLC), and how patient preferences can be used in such decision-making.Methods: Two literature reviews and semi-structured interviews (n = 143) with healthcare stakeholders in Europe and the US were conducted; results of these informed the design of focus group guides. Eight focus groups were conducted with European patients, industry representatives and regulators, and with US regulators and European/Canadian health technology assessment (HTA) representatives. Focus groups were analyzed thematically using NVivo.Results: Stakeholder perspectives on how PPS should be designed and conducted were as follows: 1) study design should be informed by the research questions and patient population; 2) preferred treatment attributes and levels, as well as trade-offs among attributes and levels should be investigated; 3) the patient sample and method should match the MPLC phase; 4) different stakeholders should collaborate; and 5) results from PPS should be shared with relevant stakeholders. The value of patient preferences in decision-making was found to increase with the level of patient preference sensitivity of decisions on medical products. Stakeholders mentioned that patient preferences are hardly used in current decision-making. Potential applications for patient preferences across industry, regulatory and HTA processes were identified. Four applications seemed most promising for systematic integration of patient preferences: 1) benefit-risk assessment by industry and regulators at the marketing-authorization phase; 2) assessment of major contribution to patient care by European regulators; 3) cost-effectiveness analysis; and 4) multi criteria decision analysis in HTA.Conclusions: The value of patient preferences for decision-making depends on the level of collaboration across stakeholders; the match between the research question, MPLC phase, sample, and preference method used in PPS; and the sensitivity of the decision regarding a medical product to patient preferences. Promising applications for patient preferences should be further explored with stakeholders to optimize their inclusion in decision-making.
Patient empowerment is a multi-factorial concept and its relevance has led to a growing body of literature; despite this attention, there is still no agreement regarding the elements that define its expression. While several studies have already investigated the positive effect of empowerment interventions on the care process outcome, the aim of this study is to investigate which factors can foster an empowered management of the cancer condition from the patient's perspective. To examine patients' perception of empowerment enablers, we asked for participants' input on the role of three factors frequently cited as positively affected by empowerment: care quality, perception of direct control and relationships within the care context, during the care process. Three focus groups were conducted with 34 cancer patients. The results highlight the perception of direct control on their treatment as the least valued element (2.87, SD 0.566) when compared with care quality (3.75, SD 0.649) and relational support in the care context (3.91, SD 0.274).Unlike traditional approaches to empowerment, patient's expression of empowerment does not mainly reside in the direct control of their condition as much as in an active role within the relationship with caretakers, such as the ability to choose the doctor, the care team or the health organisation in charge of their healthcare. Emerging aspects from this analysis of patient's perspective are central in order to adequately consider empowerment in the care process and to provide more effective care strategies.
The study aimed to investigate the mental health and emotional reaction of physicians working during phase 1 of the COVID-19 pandemic in Italy. Methods: A total of 458 Italian Health Care Workers (HCWs) working during phases 1 of the COVID-19 outbreak were voluntarily enlisted in the study and recruited with the snowball technique through an online survey. We examined our variables with the General Health Questionnaire-12 and with Visual Analog Scales. Results: The sample has a high level of psychological distress 21.26 (SD = 4.46), the emotional reaction was characterized by high level of fear for family members and cohabitants (M = 77.67, SD = 27.16) and patients (M = 67.16, SD = 27.71). Perceived control, fear for patients, and for family members and cohabitants, feeling alone and anger all contribute to a decreased mental health in Italian physicians (R 2 = 0.285, p < 0.001). Conclusion: Italian HCWs' mental health and emotional reaction have to be considered to prevent high risk of burnout and post-traumatic stress disorder (PTSD). It becomes pivotal in the next months to implement a tailored psychological intervention to take care of HCWs and to prevent costly consequences for them, patients, and the healthcare system.
Guidelines and policies support the decision process to make sure that patients can benefit from the best treatment for their condition. The implementation of guidelines and policies is evolving, allowing decision makers to be able to choose between alternatives while considering the effect of biases and fallacies that may hinder their choice. Patient preferences play a precious role in those decisions in which is not possible to recognize an objective “best” alternative and it’s not possible to nudge them toward one alternative based on scientific evidence and clinical experience. Having patient input as part of the decision process itself would allow the recognition of the attributes related to what is relevant for patients, which can be considered as important as clinical data. The authors advocate that the integration of preference-sensitive attributes with decision policies could provide a benefit against fallacies in the decision process when there is not a “best” alternative, and a shared decision-making paradigm allows both patient and clinician to recognize and pursue the option that best fits the individual case.
Pravettoni (2021) Patients' health locus of control and preferences about the role that they want to play in the medical decision-making process,
Aim of the study: Genetic testing is becoming increasingly common in clinical practice and health management; nonetheless, little is known about how the population approaches genetic services through private companies. Our study aims to describe socio-demographic aspects, health-related habits, and overall beliefs and knowledge about genetic risk and testing in a population of Italian citizens who decided to undergo a genetic examination through a private genetic company. Study design: A sample of 152 clients from an Italian private genetic company completed an ad-hoc survey from September 2016 to February 2018, addressing socio-demographic data, health habits, psycho-physic condition, perceived utility of genetic results, decision purposes about data sharing, and behavioral changes after results. Results: Participants (mean age 42.4) were predominantly female (82.2%) and were overall well-educated. Their main source of information were physicians (77%), and 41.1% entrusted the management of results to the same. Thirty-eight percentage underwent genetic analysis for cancer predisposition, 31.3% for fertility problems, 24% for dietary or intolerance issues in the period of enrolment. More than half of them (62.7%) reported a family history of the disease, and overall 69% had a current or past experience with a disease. Clients perceived the genetic screening as useful to adopt behaviors that may prevent disease onset (37.7%), to know their “real health status” (27.4%), and to adopt health-related behaviors (23.3%). 62.8% claimed they were motivated to change behaviors after results (healthier diet, practice exercise, medical checks), and they wanted to share results with their physician and family members. Discussion/Conclusion: The overview of consumers' profiles in Italy and other European countries can contribute to tailoring and regulating genetic services in a way that could be efficient in terms of healthy choices, behaviors, and health resource expenditures for the general public.
BackgroundBreast cancer is an invalidating disease and, in particular, its treatment can bring serious side effects that have a physical and psychological impact as well. Specifically, cancer's treatment generally has a strong impact on cognitive function. In the last years, new technologies and eHealth had proved to have a growing influence on health care and innovative mobile applications can be a useful tool to deliver cognitive exercise in the patient's home.
Background Patient preferences regarding their involvement in shared treatments decisions is fundamental in clinical practice. Previous evidences demonstrated a large heterogeneity in these preferences. However, only few studies have analysed the influence of patients’ individual differences, contextual and situational qualities, and their complex interaction in explaining this variability. Methods We assessed the role of the interaction of patient’s sociodemographic and psychological factors with a physician’s gender. Specifically, we focused on patient gender and attitudes toward male or female physicians. One hundred fifty‐three people participated in this randomised controlled study and were randomly assigned to one of two experimental conditions in which they were asked to imagine discussing their treatment with a male and a female doctor. Results Analyses showed an interplay between attitude towards women and the gender of patients and doctors, explaining interindividual variability in patient preferences. Conclusions In conclusion, patients’ attitudes toward the physicians’ gender constitutes a relevant characteristic that may influence the degree of control patients want to have and the overall patient‐physician relationship.
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